Joanna Johnson with her sons, Elliott and Henry, at their home near Downingtown (2016 file photo).

By John ChamblessStaff Writer

The community came together over the
past three months, with donations big and small, to fund the purchase
of a handicapped accessible van for a local family.

Joanna Johnson, a teacher at Unionville
High School, sent a note through the school district on Feb. 13 to
thank all the people who contributed to several fundraisers and a Go
Fund Me page. “This amazing community showed up big and with all of
the money raised we are shopping for a handicapped accessible van and
hope to have it in our driveway this spring,” she wrote.

The couple's sons, Elliott and Henry,
have Duchenne Muscular Dystrophy. It is the most common fatal genetic
disorder diagnosed in childhood, affecting about one in every 3,500
male births – about 20,000 cases each year, worldwide. The Duchenne
gene is found in the X chromosome, so it primarily affects boys.
Duchenne results in progressive loss of strength and is caused by a
mutation in the gene that encodes for dystrophin, a key muscle
protein. In the absence of dystrophin, muscle cells are easily
damaged. The weakness leads to inability to walk, and damages the
heart and lungs. Most young men with Duchenne don't live past their
late 20s. There is no cure.

Duchenne can be hereditary, but about
35 percent of cases occur due to a random mutation, called a
“nonsense mutation.” Elliott and Henry are in that 35 percent.

The Johnson family has needed a van
that is equipped to carry a scooter or wheelchair for the boys. The
van is not covered by insurance.

While the successful Run for Our Sons
held in Chester County each spring raises money for Duchenne research
and treatment, none of the money goes to the Johnson family. So the
community stepped up. On Jan. 6, the Unionville Basketball teams
played Garnet Valley in a girls/boys doubleheader. A collection was
taken for the family through concession sales and donations. On Jan.
28, Sovana Bistro in Kennett Square donated a percentage of the tab
for meals, beverages, and takeout orders to the Johnson family. On
Dec. 1, a Go Fund Me page was started by friends of the family to
raise money for the van.

In a message sent to the families in
the Unionville-Chadds Ford School District on Dec. 12, Dave Listman,
the district's head of communications, wrote, “Imagine how
difficult it is when you can’t have your family just hop in the car
and drive off to your destination. Imagine having to transfer your
children from their scooters into the car, and then load the scooters
in the back of the car. Imagine then having to do it all in reverse
after arriving at your destination. Imagine having to unload the
scooters and transferring your children back to their scooters so
they can enter their home.

“Imagine the Unionville extended
family and community donating enough money so the Johnson family
could purchase a van to transport Elliott and Henry independently and
safely. As Elliott’s and Henry’s disease progresses, the need for
a van that two wheelchairs can get into safely is not a luxury; it is
a necessity. And the necessity needs to be filled now. So, imagine
being a part of honoring this heroic, brave family who deserves our
support.”

As of mid-February, the page had raised
almost $60,000 of the $80,000 goal, which allows the Johnsons to
begin looking for a suitable van.

In
the family's message to the community on Feb. 13, Joanna Johnson
wrote, “I am finding it incredibly difficult
to find the right words to say thank you, but truly, there are no
words to express our overwhelming gratitude for your generosity.
Every time I think about what this community has done, I am brought
to tears by all of the people, near and far, current and retired
colleagues, past and present students and their families from grades
K-12, and so many people that I do not know or have never met who
gave so selflessly and sent messages of encouragement and love.

People
often ask me how we stay so positive. How can we possibly be down
when we are supported over and over again by so many people? When you
open your heart to the kindness of others, anything is possible. Your
incredible kindness makes our hearts so very full. Many blessings
for you and yours for 2018.”